Monday, September 5, 2011

"Bee"-ography: Grandparents edition

On Sunday September 11, the US will celebrate Grandparents Day. While it may be true that this is a celebration created by the greeting card companies to fill the void that exists in the month of September, we at Brayden Alexander Global Foundation for Hydranencephaly will be celebrating grandparents for the entire month, since they need all the celebration they can get!!

"Grandmas hold our tiny hands for just a little while, but our hearts forever."

~Author Unknown

Our first celebratory story comes from grandmother to angel Nevaeh, Linda:

Nevaeh Hope was born on July 28,2010 She weighed 3lbs 12Oz. She looked perfect in every way. She had ten toes, ten fingers and she was beautiful. The hard part was what I was seeing and what they took us the dx was did not make sense. They told us she had hydranencephaly that she only had a small part of her brain stem. I did not believe them. I told them "run the test again . THAT IT WAS A MISTAKE." It wasn't.. so Nevaeh came home. 

She was surround by love 24 hours a day. feeding her was a task as it would take 45mins to a hour to feed her 15cc .. but I didn't care how long it took. Every morning we would watch the sun rise, because it was a new day of hope, one more day that she survived. The doctors came to the house and hospice was involved they were trying to prepare me for what was done the road but I was deaf. I was determine to have Nevaeh live.

Then on the July 24 she stopped eating and she was having seize rs. Her little heart would stop seven to eight times a day , then she would jump start her heart back up. So every time we thought we lost her she would come back. She was surround by love, someone was with her 24 hours a day. I would rock her and sing all the songs a baby should hear. Then on July 28,2010 after we watch the sunrise and as I was rocking her I whispered in her ear " I love you and it was OK to go." she died in my arms that morning. It was the first time I have ever lied to any of my grandchildren.

Nevaeh taught me how short life can be and sometimes how unfair it is. All the should have and could have mean nothing. As it will change nothing. My Angel is in Heaven and I am here missing her. There is a hole in my heart and a sadness in my eyes. That I am told time will heal.
"If love could have saved her, she would have lived forever."

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